National Advisory Committee

November 14, 2012

A few weeks back, I had the privilege of coordinating (and
then watching) Project HealthDesign’s webinar,
“From the iPhone to the EMR: Can patients’ personal health data improve their
clinical care?” The hour-long webinar
provided a good, succinct summary of this seven-year project. As someone who had recently joined Project HealthDesign as it enters its
final months, I gained a lot of insight from the reflections of those who have
shepherded the project from its inception.

I’d already come to understand the significance of
Observations of Daily Living (ODLs), the main discovery to have emerged from
the work of PHD’s fourteen grantee teams.
But until the webinar presentation by Michael Christopher (“Chris”) Gibbons,
I didn’t appreciate how Project HealthDesign’s
seven-year evolution fit into the larger portrait of technology-enhanced health
care.

Dr. Gibbons joined PHD’s National Advisory Committee in 2006
when the project was first defining itself.
“I have been able to be with the project from the beginning,” Gibbons
said in the webinar, “and had the opportunity to look at not only the internal
growing pains, but how the project has evolved through broader changes that
were happening in our society . . ." Among
those societal changes are:

Prevalence
of chronic disease

Burgeoning
of the senior population

Increasing
longevity

Rising
healthcare costs

Growing
population of minorities, immigrants & underserved

Looking at our second round of grantee work from that
perspective: The dwellSense project is relevant to every one of these
changes. Both the iN Touch project
focusing on inner city teens struggling with obesity, and Estrellita’s work on
care for premature infants, show how technology might help mitigate the cost
and improve the effectiveness of health care among growing populations of the
underserved. And the research conducted by BreathEasy on people
with asthma and Chronology.MD on patients with Crohn’s disease showed how
attention to ODLs can make real contributions to the management of chronic
conditions.

Yet beyond those real-time contributions, Dr. Gibbons
pointed out how the project has helped to shape two broader trends in health
care. “In my mind, as the Project
HealthDesign project moved forward over these years with Robert Wood
Johnson [Foundation], they really contributed in two main areas to help shape
the broader trends.” Gibbons calls
these trends functional innovation and
knowledge innovation.

Even before Project
HealthDesign was launched, the healthcare industry had begun to embrace the
function of personal health records (PHRs), primarily as repositories for data that
clinicians found important. “What we found
is,” Gibbons said, “while that is important, there are other types of
information that patients think
important that traditionally and historically clinicians have not necessarily
considered as important.“ The project’s timing is important here -- it
was able to help define the function of PHRs while that function was still in
flux. “Project HealthDesign helped [clinicians] to broaden the perspective
on the types of information, the types of data that could conceivably be
important and that should go into a personal health record, and also pushed the
envelope on the types of platforms and tools, devices to use to collect this
information.”

In the realm of knowledge
innovation, Dr. Gibbons points to the project’s focus on Observations of
Daily Living as “the key innovation in this area as we go forward.” By folding ODLs into the healthcare mix,
patients across the socioeconomic spectrum can enrich the quality of their
health care. “We had underserved
populations, we had low-income populations.
We had elders, seniors, who many think are not in line in any way.”

Through the work of fourteen teams of grantees, this
seven-year project has employed technological innovation to address new
healthcare challenges raised by changes in the socioeconomic contour of our
population. By doing so, Project HealthDesign has made important contributions
to the future direction of modern health care.

Dr. Gibbons' final comment was a perfect summary
of the webinar, and maybe of the project over all as it enters its final few
months: “I think the Project HealthDesign project over time, in
the context of these broader changes, has really now set the bar for developers
to make vastly improved tools that will help both clinicians, and lead to better
outcomes for patients.”

October 01, 2012

More than 200 people signed up for last week’s webinar, "From
the iPhone to the EMR: Can patients' personal health data help improve their
clinical care?” to learn about the latest work by Project HealthDesign’s grantee
teams. Co-hosted by Stephen Downs of the
Robert Wood Johnson Foundation (RWJF) and Patricia Flatley Brennan of the
National Program Office, the webinar set a wider lens on the growing interest in
weaving patient-generated data into the matrix of clinical health care.

Steve Downs explained that as part of RWJF’s Pioneer
Portfolio, Project HealthDesign was created to stimulate innovation in the area
of personal health records. “We laid out
a vision where your medical record would serve as a platform” he explained, “and
then lots of third-party apps could be tailored to your specific needs.” The project’s five research teams took that
vision and created applications tailored for patients with chronic conditions, from
asthma to obesity to Alzheimer’s disease.

Project director Patti Brennan described what might be the
most significant finding to arise from the project, the discovery that information
from patients’ daily lives -- data about things like diet, mood and stress level
– can play an important role in managing health care. These “Observations of Daily Living,” or
ODLs, became central to the grantees’ research projects and represent a significant,
new category of patient-generated data. Brennan
also introduced a short video where members of each project team illustrated their
projects’ findings and challenges.

Project investigator Katherine Kim described how her team’s
iN Touch application helped young people struggling with obesity to become more
engaged in managing their health and lifestyle.
Dr. Stephen Rothemich outlined findings
of his team’s BreathEasy project, showing how ODLs can provide clinically
useful information and in some cases can lead to changes in diagnosis or
therapy.

Finally, National Advisory Council member Dr. Michael
Christopher Gibbons spoke eloquently of the critical role personal health
records can play in a rapidly evolving society, where new approaches are needed
to tend to the needs of a growing population of seniors, minorities, immigrants
and the underserved.

If you registered for the webinar but weren’t able to view
it, follow this link and log in with the email address used at registration.

March 19, 2012

Editor's note: This post is fourth in a series about patient engagement.

In “Participatory Medicine: Must You Be Rich to Participate?” in the Journal of Participatory Medicine, Graedon and Graedon pose a question: “Is the participatory movement leaving [the non-affluent] behind?” Their article suggests that only the affluent members of our society can afford care that is participatory. Their premise appears to be built on two assumptions that should be regarded as faulty.

Redefining patient engagement

The first is that the only engagement relevant to the participatory community is the engagement between a patient and a clinical provider. The primary causes of morbidity and mortality in contemporary society are chronic diseases. By definition, individuals have these ailments for up to 30 or 40 years. Antecedents of atherosclerosis (fatty streaks) have been documented in 10-year-old children (5), yet most individuals only become aware of the existence of a problem after the age of 50. As such, the actions, behaviors and exposures that impact health begin early in life and are often the result of engagement with a vast array of individuals (relatively few of which are medical providers). In addition, most patients are actually in clinical settings for a relatively short period of time over the course of their lives. In other words, most of the interactions, or participation, that govern the important behaviors that impact health occur outside of the clinical setting and between patients and non-clinicians.

This reality is in no way an attempt to downplay the importance of either clinical encounters or clinical providers, but rather an attempt to illustrate the fact that when we fail to understand the full context of participatory medicine, we may similarly fail to understand the true barriers, drivers and opportunities for participatory medicine to make a difference. More importantly, we may also be unable to fully understand why patients have such difficulty achieving clinical goals or why well-intentioned and elegantly designed interventions yield only marginal results. In fact, emerging data suggest that patients are participating in their health care in a big way, just not as much with their health care providers.

Patients turn to the Internet for health information and support

For the first time ever, more Americans are turning to the Internet for health and medical information than are turning to health care providers.(1) In addition, emerging evidence suggests that the Internet has considerably more influence over consumer health decisions and actions than traditional channels like print, TV and radio.(3) The numbers of online health seekers have swelled to more than 175 million people to date.(6) Increasingly, they report having become informed and empowered. They have generally been able to find what they are looking for and report that the Internet is increasingly helping them to connect to emotional support and practical help for dealing with their health issues.(2) In fact, racial and ethnic minorities and the poor appear to be using some forms of technology more than their non-minority counterparts.(4)

We can argue and speculate as to why these things are happening or the long-term impact of these shifts, but the reality is that these shifts are, in fact, happening. These changes may represent an important opportunity to reach and engage many patients, including those who historically have been left behind. The most important questions then become:

Do our evolving notions of what health care and participatory medicine need to become include the realities in which patients live?

Will current and future health care providers embrace these realities and lead the inevitable change?

If not, we may be destined to well-intentioned but largely unrealistic notions that ultimately leave the health care system far behind where many patients are already going.

It was a fitting contribution to the “What if health care … ?” dance on Twitter. Contributions poured in from patients, clinicians, organizations, and policy-makers, creating a wonderful jumble of inspiration. Hopefully connections can be made and projects launched, but in the meantime, we all had a marvelous time imagining possible futures, including one which acknowledges the role of patient-generated data.

What’s your health care dream?

For me, Twitter is a free-wheeling space where people dance with ideas. Anyone is welcome to jump into the spotlight and take a twirl. That's how I see hashtags — spotlights on circles of people, talking about certain ideas. Create a hashtag and you call the tune. Add a hashtag to your tweet and you join the circle.

Over the last few weeks #whatifhc (which stands for “What if health care…?”) became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.

It started when I tweeted a quote from Peter Margolis of the C3N Project:

“What if it was as easy to find out how to ... find a medicine that’s right for you as it is to order exactly the book you want?” #c3n

Susannah is right. Twitter is a dance. We often remain wallflowers until a new song is played. A hashtag catches our eye allowing us the chance to meet new partners or reunite with old ones. When I saw #whatifhc, my dyslexic mind and injured soul saw #wtfhc. I blushed to use this hashtag, as I am not one to curse. It made me uncomfortable. What would people think?

I suppose a lot of things in health care are uncomfortable.

It is uncomfortable to lie on bedsores while in constant pain. It is uncomfortable to have a catheter placed. It is uncomfortable to be woken in the middle of the night because staff members think that is the best time to check your vitals.

It is uncomfortable to gasp for breath while fluid to fills your lungs as you lay dying.

I might have lost a few followers when I tweeted with this tag. I seemed the angry patient. I made them uncomfortable.

I paint about this discomfort frequently. When you look upon The Walking Gallery you will see a great deal of #whatifhc jackets. Susannah’s jacket is mostly a #whatifhc interpretation. They are beautiful and hopeful, but you will see #wtfhc jackets too.

What if a day came when I only had to use just one tag: #whatifhc?

What's your health care dream? What's your nightmare? Add it in the comments below or join the dance on Twitter.

Halamka shares five major developments in health, health care and health technology he expects to occur in the next five years.

“Less expensive cloud-based software, combined with tablet computers, will unleash a wave of software innovation. Until very recently, innovation in medical IT has depended upon the development schedules of a few very large vendors who sell hospital systems with $100 million price tags. In the future, electronic health records will become increasingly modular, similar to the online app stores where consumers download games or programs for their phones. Imagine a cool new app that provides a dashboard for diabetics, showing their daily glucose readings and sounding an alert if they aren't managing their disease well.”

“In my parents' generation, doctors were considered largely infallible, and the medical record was something owned and viewed only by clinicians. Today, with credible medical knowledge available on the Internet and electronic records allowing doctors and patients to view the same data, joint decision making is becoming more commonplace. Research shows that shared decision making between doctor and patient results in better outcomes.”

“Rather than seeking a ‘magic pill’ or single set of policies/practices/programs that can ‘solve’ the problem for all, we need people, policies and programs that educate, encourage and support every provider, healthcare professional, hospital , patient and caregiver to consider their role in the generation or elimination of disparities. When this tipping point is reached, momentum will inevitably propel the policy, practice, regulatory and IT innovation that will be needed to successfully achieve the vision of an equitable healthcare system and health outcomes.”

“If all we do is use Health IT to improve what occurs in the traditional clinical encounter, without addressing patient/caregiver interaction between encounters through Health IT, we are unlikely to sustain patient engagement efforts, improve provider-patient communication or reduce disparities, particularly over the long term.”

November 01, 2010

For patients using our smartphone application for collecting and tracking ODLs, lately the team has been wrestling with the question of how long to run the intervention. Given that asthma is a chronic condition with intermittent, and often unpredictable acute exacerbations, we would need to collect the ODLs for a sufficiently long time to increase the likelihood that we’d capture data during at least one acute exacerbation period, but not so long that the patients would tire of using the application.

It seemed to us that there would be some ideal length of time that would balance both of these considerations, while giving us adequate time to allow for iterative improvements to the application based on patient and clinician feedback. The question of how long to run the intervention is made more complicated by the fact that typically, behavioral interventions are supported by regular interactions with clinicians over time, and that there is a process to incorporate the intervention into the patients’ lifestyle and the clinical practice.

We consulted with Project HealthDesign National Advisory Committee member, David Ahern, Ph.D., to get his recommendations on this question. After an interesting discussion with David, we concluded that the best approach would be to conduct two short intervention periods of two to four weeks each, and then run the final, full trial for three months.

During week one, David predicted, patients and clinicians would be getting used to the tool. The following two to four weeks would provide enough time then to get good compliance with ODL tracking. Following this four week intervention period, we’d collect feedback from patients and clinicians, adapt the system and then run another short intervention. We’d again make improvements to the tools and then begin the full evaluation trial for a three month period, giving us enough time to gather ODLs when patients were likely to have at least one acute exacerbation.

This timeframe for the evaluation discussed feels right to the team. We never expected that we’d create a tool that patients would necessarily have to use forever. The key to ultimately answering this question will be fine-tuning the intervention period to determine just how long patients and clinicians will need to use the tools to see the benefit. To answer that question definitively, we’d need to do a follow-up study looking at differing lengths of interventions and their relative effectiveness in achieving the intended outcomes. For now, we’ll focus on getting the tool right and achieving patient and clinician compliance for our limited evaluation phase.

To those who have had similar scenarios with patients, have you ever encountered an issue quite like this? If so, how did you test it out to find what works best for patients?

Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign:

"On days where I could have benefited from the feedback of ODLs the most, I was the least likely to be recording them. Why? On the worst days, I was literally too nauseated to answer my phone when it rang, let alone futz with one of the three Crohn's symptom tracking apps on my iPhone - none of which even acknowledged my nausea and related gems as symptoms."

But even as his personal health deteriorates (and hopefully improves!) Kirienko is recording the lessons he's learning about health care social media:

"Promising practice:We need to rethink our ODLs reporting methods. The obvious solution: include the ability for caregivers/very special friends to report ODLs. However, I live alone for weeks at a time. The less obvious solution: make it impossible not to report. As in, no status is in fact, a status."

Another really interesting insight relates to the fact that a small group of patients account for much of health care costs in the U.S.:

"Contextual barriers to clinical collaboration via ODLs:These solutions are most relevant to the 5% of a given patient population that have multiple co-occurring conditions and tend to account for over 50% of the cost of annual care. (see Medicare and complex conditions)

Promising practice:We have to design for the 95% without sacrificing the 5%'ers for whom this technology has the potential to be truly life saving. This is where I think a multi-tiered approach to ODLs makes sense: maintain a lightweight interaction limited to the bare minimum of ODLs with the least effort to record, while revealing more granular reporting of an expanded ODLs set as needed for those who can use them."

His insights go straight to one of the points I make all the time: Patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge.

Reading his entries also makes me think there is a new category of e-patient: the participant-entrepreneur. Not content to stand by and let other people innovate for them, these people are creating the services, devices, and communities they need.

April 26, 2010

On March 26th, I presented via tele-video conference on approaches to evaluation for the Project HealthDesign grantees who were participating in a workshop at the Center for Better Health at Vanderbilt.Despite some trepidation about the technology not working, it seemed to go well.I think we will use it more often in our work with the RWJF Aligning Forces for Qualityprogram going forward.

The focus of the talk was to promote both qualitative and quantitative methods appropriate for the type, scope, and nature of the projects.It was a lively session that included an exercise for the grantees to generate and discuss possible evaluation approaches to a hypothetical project scenario.The biggest challenges that emerged were: (1) measures that would be cross-cutting and (2) integration of ODLs into the clinical enterprise.

With respect to measures, in addition to including condition-specific instruments relevant to each of the individual projects, patient and provider engagement and activation received much attention.I suggested Judy Hibbard's Patient Activation Measure (PAM) as one option that seemed to make sense across all projects since one goal is to engage or activate patients to monitor and report ODLs. What other measures are available to capture this critical dimension?

The questions of “Which providers will manage the ODLs” and “What will these providers do with the stream of ODLs” were another topic of discussion. Assuming we can address these fundamental questions then the need for a measure emerges. How can we assess adoption and uptake by providers of these new data streams?

February 02, 2010

By Omid Moghadam, a member of the Project HealthDesign National Advisory Committee.

I recently joined the grantees of Project HealthDesign at the Vanderbilt University Center for Better Health in Nashville for a two day user-centered design workshop. Their innovative projects focus on identifying and integrating patient’s observations of daily living (ODLs) into everyday clinical care. I am very excited about the challenges these new projects raise, and look to our grantees to provide the evidence that ODLs can become part of an active feedback loop that can provide clues into how we improve care and manage disease.

These projects benefit from and build on the previous projects that focused on defining a common platform that could allow a patient to become an active participant in her own care and wellness. What our grantees showed us was that technology designed around a common platform and with the patient in mind can open doors to new models of care and health. In the process, we move from data to knowledge and from episodic to continuous care, with the patient as a partner and not just an interested party. In 2010, Project HealthDesign will continue to focus on transforming a personal health record from a repository of health information to a place where interactive applications can assist the consumer in managing all aspects of their care. Personal Health Records have come along way in a short time, but we believe that this is only the beginning.

As Project HealthDesign gets ready to announce the grantees, we would love to hear what ODLs you think are important to capture from patients. Add to our ODLs brainstorm

June 30, 2009

This summer is an exciting time for Project HealthDesign. We had a tremendous response to the call for proposals for the second round of project funding. We received brief proposals from 145 teams across the U.S. and are enthused by the high level of interest. Clearly the idea of exploring the potential of integrating data from observations of daily living into conventional health care processes intrigues researchers, providers, designers and technicians across the country.

Over the next few weeks, we will be evaluating the submissions and inviting up to 25 teams to prepare full proposals. We expect to announce the final list of grantees by December. The teams will then get to work on collecting and integrating observations – about meals, sleep, exercise levels, pain episodes and even moods – into the clinical care process.

We have an excellent national advisory committee (NAC) to work with us on the review process and think through the ongoing strategy. We have added some new NAC members, who we greatly look forward to working with. The 13 members of the committee read like a who’s who of health information technology and bring a range of perspectives. The six new members are:

Veenu Aulakh, M.P.H., is the senior program officer for the Better Chronic Disease Care program at the California HealthCare Foundation (CHCF). Veenu was not a member of the NAC the last go-around, but CHCF provided valuable support for the first phase of the project and Veenu was instrumental in providing guidance.

Susannah Fox is associate director for Digital Strategy at the Pew Internet & American Life Project, where she leads the Project's health research and oversees its digital strategy. Susannah’s role on the NAC differs from others in that she will be advising the program on overall strategy but will not review proposals or make award recommendations.

John Halamka, M.D., M.S., wears multiple hats as a physician, a CIO and a health care IT innovator. He is chief information officer at the Harvard Medical School and Beth Israel Deaconess Medical Center and is also chair of the U.S. Healthcare Information Technology Standards Panel and chairman of the New England Health Electronic Data Interchange Network.

J. Daniell Hebert is CEO and co-founder of the MOTO Development Group which is a product research and development company focusing on innovation and product development that blends electronics, software, and mechanical engineering. Prior to founding MOTO, he was a researcher in MIT's Artificial Intelligence Laboratory and later joined Apple Computer as a researcher of advanced manufacturing systems.

Carlos Roberto Jaén, M.D., Ph.D., is a practicing family physician and professor and chairman of the Department of Family and Community Medicine at the University of Texas Health Science Center at San Antonio. He is also co-director of the AAFP-funded Center for Research in Family Medicine and Primary Care and is the PI of the National Demonstration Project evaluation of TransforMED.

Deven McGraw, J.D., M.P.H., L.L.M., is active in efforts to advance the adoption and implementation of health information technology and electronic health information exchange to improve health care. Currently, Deven is director of the Health Privacy Project at the Center for Democracy & Technology which is focused on developing and promoting workable privacy and security protections for electronic personal health information.

They join seven committee members who guided us in the first round of the project and are re-upping their commitment to the NAC for this next endeavor.

We are honored to have the entire NAC on board. Together they provide us with the perfect mix of experience, expertise and innovative thinking to ensure that the program produces valuable insights – ultimately benefitting patients, providers and policy-makers.